Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

Similar early intervention referral rates following in-person administration of the Bayley Scales of Infant and Toddler Development, 4th Edition versus Telehealth Administration of the Developmental Assessment in Young Children, 2nd Edition in the high-risk infant population.

BACKGROUND: Infants with prematurity, low birthweight, and medical comorbidities are at high risk for developmental delays and neurodevelopmental disabilities and require close monitoring. Due to the COVID-19 pandemic, high-risk infant follow-up (HRIF) programs have adapted to perform developmental assessments via telehealth. OBJECTIVES: Describe the referral rates to initiate, continue, or increase/add early intervention (EI) therapies based on in-person use of the Bayley Scales of Infant and Toddler Development, 4th Edition (BSID-IV) or telehealth use of the Developmental Assessment in Young Children, 2nd Edition (DAYC-2). METHODS: A retrospective chart review was conducted on 203 patients seen in the HRIF program at an academic medical center in Southern California. Patients were divided into in-person (BSID-IV) and telehealth (DAYC-2) assessment groups. Statistical analyses were performed to describe demographic characteristics, medical information, and referral rates for EI therapies by the types of visits. RESULTS: The in-person and telehealth groups demonstrated similar demographic and clinical characteristics and comparable referral rates for initiating EI therapies. Telehealth patients already receiving therapies were recommended to increase/add EI therapies at a higher rate compared to in-person patients. CONCLUSIONS: The BSID-IV is widely used to assess for developmental delays in the high-risk infant population, but in-person administration of this tool poses limitations on its accessibility. Telehealth administration of an alternative tool, such as the DAYC-2, can lead to similar EI referral rates as in-person administration of the BSID-IV. Increased use of telehealth developmental assessments can promote timely detection of developmental delays and minimize gaps in healthcare access.

Enhancing access to early intervention by including parent navigators with lived experience in a pediatric medical home.

INTRODUCTION: A growing number of children have developmental delay (DD) or intellectual and developmental disabilities (IDD), and early intervention (EI) can improve their developmental trajectory. However, access to EI is fraught with disparities. This article describes the development of Parent Navigator (PN) program that placed three parents with lived experience in a pediatric medical home to serve as community health workers to provide support to families with a child with DD or IDD to access EI and other needed resources. METHOD: We used a mixed-methods approach to program evaluation that included (a) documenting the number of referrals to the EI programs made by the PNs; (b) documenting referral outcomes; (c) conducting a physician satisfaction survey; and (d) interviewing the PNs to reflect on their experiences assisting families. RESULTS: From July 2018 to September 2020, our PNs facilitated 623 referrals to EI due to significant developmental concerns found during a pediatric visit. Rates of successful connection to EI were 71%. Survey results indicated that pediatricians felt the PNs were a valuable part of the healthcare team and helped reduce their own job stress. The PNs provided multiple examples of their methods of addressing barriers to EI access by relating to families with their own lived experience and by "meeting families where they are at." DISCUSSION: The PN program might be a successful approach to addressing disparities in EI access for families in need by using an innovative method of employing individuals with lived experience in the pediatric primary care setting. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Connecting to Early Intervention Services After Neonatal Intensive Care Unit Discharge in a Medicaid Sample.

OBJECTIVE: To describe caregiver perspectives regarding connecting to early intervention (EI) services after neonatal intensive care unit discharge in a Medicaid sample. METHODS: Open-ended semistructured interviews and focus groups were conducted with English- or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow-up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. RESULTS: Thirty-two participants completed the study. The infant's median (interquartile range) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with fourth quartile economic hardship. Eighty-one percent were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm and 63% had a diagnosis of developmental delay. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to facilitate connection to EI. We identified subthemes related to the person in environment: health care environment/support and socio-economic resources, parent perspectives and built environment; provider level factors such as appointment scheduling, staff limitations, and parent suggestions to improve health care and service navigation, which included improved information sharing, the importance of patient advocates, video resources, early referrals to EI facilitated by the discharging hospital and system workarounds. CONCLUSIONS: The results from this study may provide a granular roadmap for providers to help facilitate referrals to EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the connection to EI services.

Risk Factors for Parenting Stress in Parents of Children Treated with Laser Surgery for Twin-Twin Transfusion Syndrome 2 Years Postpartum.

OBJECTIVE: Twin-twin transfusion syndrome (TTTS) is a rare but serious condition that can occur in monochorionic and diamniotic twin pregnancies. Research indicates almost half of postpartum mothers with TTTS may have clinically significant levels of stress. However, no studies have measured the levels of parenting stress at 2 years postpartum, and little research has been conducted on sources of stress. STUDY DESIGN: A prospective cohort study was conducted. Data were collected from parents whose children were treated with laser ablation in utero and were 2 years old at the time of screening. The Parenting Stress Index - Short Form (PSI-SF) and its three subscales were used to collect data. Descriptive, bivariate, and multivariate analyses were conducted to determine significant predictors associated with each outcome. RESULTS: A total of 99 children from 56 families were enrolled. Unmarried status (B = -22.8; p = 0.039) and lower maternal educational level (B = -7.8; p = 0.01) were both significantly associated with higher PSI-SF total score. CONCLUSION: Subgroups of parents whose pregnancy required laser surgery for TTTS may continue to have clinically significant levels of stress at 2 years postpartum. It is important the health care team is aware of this and the sociodemographic risk factors to provide appropriate support for families.

Variations in Care for Breastfed Infants Admitted to US Children's Hospitals: A Multicenter Survey of Inpatient Providers.

BACKGROUND: Studies have revealed an association between hospitalization of breastfed infants and weaning posthospitalization. It is unknown what steps inpatient providers at children's hospitals are currently taking to support breastfeeding mothers of hospitalized infants, their comfort providing breastfeeding counseling, and what training they receive. METHODS: We conducted a multicenter survey study of pediatric providers who care for infants hospitalized at 3 urban, tertiary-care children's hospitals over a 12-month period. A convenience sample of nurses, residents, and attending physicians agreed to participate. Participants completed a 24-question questionnaire addressing provider practices, comfort with breastfeeding counseling, and previous breastfeeding education. Data were summarized as medians (interquartile ranges) and frequencies (percentages). Kruskal-Wallis and χ2 tests were used to compare between provider types. RESULTS: A total of 361 out of 1097 (33%) eligible providers completed the survey: 133 (21%) nurses, 166 (45%) residents, and 62 (63%) attending physicians. Provider practices varied by provider type. We observed a general trend that providers do not routinely review breastfeeding techniques, directly observe feeds, or use standardized breastfeeding assessment tools. Residents and attending physicians were more likely than nurses to feel comfortable with breastfeeding counseling (P = .02). Residents were more likely than nurses and attending physicians to have received breastfeeding education in the last 3 years (P < .001). CONCLUSIONS: Practices, comfort, and previous education varied by provider type. There was a general pattern that providers do not routinely perform certain practices. Further studies are needed to determine if inpatient provider practices affect weaning posthospitalization and if inpatient quality improvement initiatives will help mothers continue breastfeeding posthospitalization.

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study.

BACKGROUND: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. METHODS: Open-ended semi-structured interviews were conducted with English or Spanish- speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. RESULTS: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. CONCLUSIONS: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.